Mom of Newly Diagnosed 18 Year Old -- HELP!

[jeriorleans]

My son, age 13 was diagnosed in August. He lost his hearing within 3 months. He also has lung involvement. He was put on 60 mg of predisone and 150 mg of Cytoxan. I too was very scared (still am). He has been on the drugs now for 1 month. Although the Cytoxan causes him some nausea he has been able to attend school. There are days where he checks out early and a few days that he has checked in late but for the most part he has been attending. The first nine weeks when he was not on the treatment plan he missed 18 days. I feel your pain, its so hard to watch you child suffer. My son seems to be returning to his old self. He is outside playing again and laughing again. There are rough moments. He becomes very emotional. The weight gain has been hard on him. He has gained about 15 pounds which when your 13 adds up to 100. The predisone gave him horrible acne but now that they are going down on the dose it is improving. The mood swings haven't been that bad, I find I just have to keep him busy. I can't let him think about what is going on. Sunday nights are the worse when its quiet and calm in the house. I actually think that I am more scared then him though. Every time he coughs or has a strange ache I secretly freak out inside. A few nights ago he had a nose bleed in his sleep and he choked on it and all I could think was "what if he hadn't woke up". But we have to let them live there lives, we can't put them in a bubble. We have to let them do what they can, secretly watch, and when they don't know their limitations calmly put them back on course.

Best of luck to you.

[mikecaven]

Sorry to hear about your son. There is a lot of hope for you with Wegeners treatment these days. I got it first when I was 33. It went into remission within a year. Same treatment that he is going through. No bad side effects with Cytoxan (150 mgs) for me. I was on prednisone, 25 mgs and had a few side effects. I had primarily lung and sinus issues.

I am now 62 and 1.5 years ago Wegeners came back (28 years later). It surprised me as I had been extremely healthy the last 28 years. This time I had some damage to my kidney was. I went on 60 mgs of prednisone (that's a lot) and 150 mgs daily of Cytoxan.

I was sick both times but the treatment has be back in remission again. I am now taking Methotrexate once a week (6 pills) and feeling great. Kidney damage causes me to be a little anemic...but the damage is not bad enough to do dialysis, etc.

So...just want you to hear my story. I am one of the longest in remission that my Dr. has heard from. Cleveland Clinic is the best at training doctors. I am in Dallas and my Dr. is John Cush. Let me know if I can answer any questions for you. My email is [email protected]

[Sangye]

Glad to hear from you, Mike. I'm so happy you're back in remission! I hope someday they can figure out why some people go into remission easily, some take a long time, and some never do.

I think of your 28 year remission (and not just remission but excellent health!) quite often actually. Especially when things aren't going well and I'm losing hope. I'm grateful to you for posting your story the first time and for this awesome update today.

[Doug]

Yes, it is especially important that parents of teens and young people just diagnosed with WG read this story, Mike, because they can take some hope from your experience! Feel free to break in in future!

As always, we try to encourage people to have realistic hopes, but never give up hope, be positive, follow doctors' instructions and treatments closely because good (i.e. remission, relatively unaffected lives) results are possible. Even when the results aren't wonderful, they are better than the 9 in 10 who used to die within two years in the dark ages before they knew how to bring WG into line.

Twenty-eight years of remission makes me feel better, too, for that matter! As usual, I want to offer this website as a source of general information about WG and other forms of vasculitis:

Front Page | Vasculitis Foundation

[coffeelover]

WOW MIke! What an Awesome story!
Thanks for sharing
LIsa

[Doug]

I'm happy to see Andrew added a link to a young Australian weggie's blog. You miught want to check this out, jeriorleans and Betty.

http://4trevsplace.blogspot.com/

It's quite the story, and is told from the point of view of a teenage weggie by the name of Trev

[bboop]

So, yesterday, my husband and I took our son to see Dr. Peter Merkel @ Boston University. He's a Weg's expert. Even though our son doesn't have some of the diagnostic Wegs symptoms (no bladder involvement, no sinus involvement), the CT of the nodules in his lungs confirmed Wegs, according to Dr. Merkel.

Dr. Merkel is keeping our son on 60mg. of Pred, going down to 50mg in two weeks. Plus, he starts Cytoxen on Tuesday, after he banks his sperm on Monday. Dr. Merkel said that 3-6 mos. of Cytoxen probably won't make our son sterile or make him susceptible to bladder cancer -- the old studies showing this were in people who had taken Cytox for 2-years -- but he recommended banking sperm just in case. He did not want to put our son on Rib (can't remember the name, but it's the new drug that's being used for Wegs -- Merkel was in on the study), because our son is ANCA negative and the study was done on people who are ANCA positive. He said it might or might not work and he didn't want to take the chance that it wouldn't work.

Dr. Merkel was positive -- he told my son "We're going to get you into remission," but he also said that 50% of the people who have Wegs relapse. Those are not great odds for leading a reasonably normal life. Maybe I'm just so exhausted by the last month of in-hospital and now out-of-hospital doctor visits and medical runs an hour each way from my house -- I feel as though I could sleep for a week!

My son decided that he'd rather see Dr. Merkel than the rheumy at BI -- so Dr. Merkel graciously accepted my son as a patient. He's a very funny, kind, and sweet man and in the room next to us was a family who flew in all the way from Washington State to see him.

Dr. Merkel told my son that he can go back to school as soon as he wants -- as long as he gets weekly blood tests. My son has set the end of this month as his goal for going back. I hope it's an attainable goal.

Anyway, that's the story.

Bonnie

[Sangye]

I'm so relieved!! If a Wegs specialist says your son is fine to go to school (or not fine) you can feel completely at ease going with that. If his blood counts start to trend too low, Dr Merkel will catch it in time and advise you what to do.

I know you're utterly exhausted and details start swimming in your head after awhile. Let me clear up a couple things that you can sort through later when you're more rested.

1) Wegs isn't diagnosed by certain areas being involved. (The bladder is not an area affected by Wegs) There is a "classic" presentation of Wegs-- sinus pain, bloody nose, symptoms of URI, that progress into lung and then kidney involvement. I don't know the numbers, but it seems to me very few Weggies have a classical presentation! And like I said earlier, kidney involvement is not inevitable.

2) Diagnosis of Wegs is made by (+) ANCA, tissue biopsy, symptoms/signs, other labwork (blood, urine) and diagnostic tests (eg CT scan showing nodules). There are times when a tissue biopsy isn't taken because the other signs and symptoms are so decisive.

3) It's good to know about the ctx and bladder cancer. However, I went into menopause during my 3rd month on ctx, so I'm glad he's banking those sperm just in case.

I hope you can all get some rest this weekend. You're doing a great job with all this stress. Give yourself a pat on the back and be good to yourself, okay?

[Doug]

I believe the odds of getting bladder cancer for people put on cytoxan is 30 times greater than the general public. The body doesn't metabolize 100% of any drug you take in, so that's the reason, as I understand it, that there is such an emphasis on drinking lots of water with that particular drug and others, as indicated on the detail sheets pharmacists include with prescriptions and oral instructions given by doctors. You are trying to flush out as much unmetabolized drug as possible. The first thing my doctor always asked me when I was taking Cytoxan was "Are you drinking enough water?" I never learned exactly what "enough" is, so I'd try to drink at least a 32 oz. glass of water with that pill. Did it decrease my cancer risk? I guess the future will tell.

[Sangye]

My doc said "enough" was whatever it took to keep the urine clear (ie, not amber colored). For most people that's probably about 2 liters.